Quality Standards. Services providing Long-Term Ventilation for Children and Young People. Midlands Children s Long-Term Ventilation Network

Transcription

1 Midlands Children s Long-Term Ventilation Network Quality Standards Services providing Long-Term Ventilation for Children and Young People Version 3.1 April

2 April 2015 West Midlands Quality Review Service These Quality Standards may be reproduced and used freely by organisations which commission or provide NHS-funded care for children and young people needing long-term ventilation in England for the purpose of improving health services for residents and those who use services within the Midlands. No part of the Quality Standards may be reproduced by other organisations or individuals or for other purposes without the permission of the Midlands Children s Long-Term Ventilation Network and the West Midlands Quality Review Service. Organisations and individuals wishing to reproduce any part of the Quality Standards should the West Midlands Quality Review Service on: swb-tr.swbh-gm-wmqrs@nhs.net Whilst the Midlands Children s Long-Term Ventilation Network and the West Midlands Quality Review Service have taken reasonable steps to ensure that these Quality Standards are fit for the purpose of reviewing the quality of services in the Midlands, this is not warranted and the Midlands Children s Long-Term Ventilation Network and West Midlands Quality Review Service will not have any liability to the service provider, service commissioner or any other person in the event that the Quality Standards are not fit for this purpose. The provision of services in accordance with these Standards does not guarantee that the service provider will comply with its legal obligations to any third party, including the proper discharge of any duty of care, in providing these services. Review by: April 2018 at the latest ument Control: Version No. Date V Revised version V Incorporating national comments Change from previous version V Paragraph added about organisation s clinical governance arrangements UKAS accreditation logo added

3 CONTENTS Introduction... 3 Quality Standards... 9 Services providing Long-Term Ventilation for Children and Young People... 9 Information and Support for Children, Young People and their Families... 9 Staffing Support Services Facilities and Equipment Guidelines and Protocols Service Organisation and Liaison with Other Services Governance Children s Long-Term Ventilation Network Information and Support for Children, Young People and their Families Staffing Service Organisation and Liaison with Other Services Governance Commissioning Service Organisation and Liaison with Other Services Governance Appendix 1a Standards Development Group Appendix 1b Pathfinder Working Group Appendix 2 Reference Sources Appendix 3 Cross-References to Care Quality Commission and NHS Litigation Authority Standards Appendix 4 Presentation of Evidence for Review s Appendix 5 Glossary of Terms and Abbreviations WMQRS LTV QS V

4 INTRODUCTION The number of children and young people in the UK requiring long-term ventilation has increased significantly in recent years, from one in 1975 to 24 in 1988, 141 in 1998 and 933 in Noyes (2006, p.8) highlighted the human costs of long-term ventilation and found significantly lower health-related quality of life in long-term ventilated children. Parents also identified consequences to long-term hospitalisation of their children including reduced communication, concentration and confidence. Signs of institutionalisation in children's behaviour have also been identified by parents, including shyness and a lack of a sense of belonging (Noyes, 1999, p.446). Linahl and Lindblad (2011) highlighted that limited available time affected the inclusion of families in their work and community with lack of formal care packages being a major contributory factor. Children and young people's thoughts around health and the restrictions of long-term ventilation can identify the extreme frustration felt by some children, for example it makes me feel like some kind of dog, chained out in the front yard (Linahl, Lindblad 2011, p.252). Children and young people on long-term ventilation require the most complex care that is given outside a hospital environment and there are significant risks involved in looking after a child on long-term ventilation in the community. Supporting these children to live as normal a life as possible at home with their families brings many benefits and any risk involved must be balanced against the benefit to the child of being at home rather than in hospital long term. All risks must be fully assessed, understood by the family and managed appropriately. A balanced approach to risk management is needed if children and young people are to take advantage of the quality of life, educational, social and developmental opportunities of living in the community. Their care must be of the highest possible quality in a child-centred environment, by staff trained in caring for children ( Learning from Bristol. The Report of the Public Inquiry into children s heart surgery at the Bristol Royal Infirmary , Ian Kennedy, July 2001, p2). Lack of training in treating children and young people may lead staff to treat them inappropriately, however unintentionally. This includes not recognising children s different clinical needs, or not engaging with them in an age-appropriate way or, for younger children, not engaging with their parent or carer appropriately. ( Getting it Right for Children and Young People A Review. Professor Ian Kennedy, 2010). These Quality Standards aim to improve the quality of services for children and young people needing long-term ventilation. The Standards help to answer the question: For each service, how will I know that national guidance and evidence of best practice have been implemented? The Quality Standards are consistent with NHS England s Service Specification E07/S/c Paediatric Long-Term Ventilation and are suitable for self-assessment, monitoring by commissioners and use in peer review visits. They describe what services should be aiming to provide and all services should be working towards meeting all applicable Quality Standards within the next two years. The Standards were initially developed by a Sub-Group of the Midlands Children s Long-Term Ventilation Network (Appendix 1a) with input from Dr Andrew Selby, Consultant in Paediatric Intensive Care and Long-Term Ventilation, Alder Hey Children's NHS Foundation Trust and the North West and North Wales Paediatric Long-Term Ventilation Network and Elspeth Jardine, Ventilation Service Coordinator, NHS Greater Glasgow and Clyde. The Standards have subsequently been revised by a national Pathfinder Working Group (Appendix 1b) and circulated nationally for comment. The Standards therefore build on work undertaken in various parts of the country. The Quality Standards are based on and support implementation of national strategies and guidance, including NICE guidance and Quality Standards. Appendix 2 lists relevant national guidance and links it to each of the Quality Standards. Appendix 3 cross-references each of the Quality Standards to the Care Quality Commission s Essential Standards of Quality and Safety and NHS Litigation Authority s Risk Management Standards. We hope that through the Quality Standards and, at some future date, a peer review programme, the quality of services providing long-term ventilation for children and young people will improve and in particular: a. Children and young people who need long-term ventilation, and their families, will know more about the services they can expect and 1988: Robinson (1990), 1998: Jardine et al (1999) - All cited in Noyes (1999) p : Wallis et al (2011) WMQRS LTV QS V

5 b. Commissioners will be supported in assessing and meeting the needs of their population, improving health and reducing health inequalities, and will have better service specifications. c. Service providers and commissioners will work together to improve service quality. d. Service providers and commissioners will have external assurance of the quality of local services. e. Reviewers will learn from taking part in review visits. f. Good practice will be shared. g. Service providers and commissioners will have better information to give to the Care Quality Commission and Monitor. SCOPE OF THE QUALITY STANDARDS Long-term ventilation is defined as "any child when medically stable requiring a mechanical aid for breathing after an acknowledged failure to wean [off the ventilator], or slow wean, three months after institution of ventilation (Jardine et al, 1998). All ventilation was once exclusively undertaken in children's intensive care units. The vast majority of children who receive ventilation receive it in acute medical situations and, when this situation is resolved, the need for ventilation usually ceases. For a small group of children, however, the need for ventilation remains when the acute stage has passed. For this group of children, usually referred to as long-term ventilated children, the last two decades have seen a move from life in an intensive care unit to life at home. Ventilation is also now sometimes initiated electively in sleep units or ward environments. Within this group of children there are different levels of need, as defined in the National Framework for Children and Young People s Continuing Care (2010): High (Level1): Severe (Level2): Priority (Level3): Is able to breathe unaided during the day but needs to go onto a ventilator for supportive ventilation. The ventilation can be discontinued for up to 24 hours without clinical harm. Requires ventilation at night for very poor respiratory function; has respiratory drive and would survive accidental disconnection, but would be unwell and may require hospital support. This includes those with no respiratory drive at all who are dependent on ventilation at all times, including those with no respiratory drive when asleep or unconscious who require ventilation and one-to-one support while asleep as disconnection would be fatal. These Standards apply to the care of children with an assessed and agreed continuing care package and those needing level 1 care who do not have a care package. They apply to both long-term invasive and non-invasive ventilation. A small number of Standards, or sections of Standards, apply only to children needing Level 2 or Level 3 care, or to children needing Level 1 ventilatory care but whose other conditions result in a higher complexity of need. The Standards are about the care of children and young people. Planning for transition to adult services should start at around 14 years and transition normally takes place between the ages of 16 and 18. In exceptional circumstances transition may be delayed but should be completed by age 21. Flexibility in the age of transition may be necessary while commissioners and providers ensure appropriate arrangements are in place. Some services provide care for adults as well as children and so transition will involve a change of funding arrangements at age 18 but may not require a change of care provider. The Quality Standards for Services providing Long-Term Ventilation for Children and Young People should sit within organisations overall clinical governance arrangements. The WMQRS Clinical Governance Quality Standards describe the clinical governance arrangements which should be in place. Compliance in NHS provider organisations will usually be assured through NHS Litigation Authority Standards. Non-NHS organisations may wish to use the WMQRS Clinical Governance Quality Standards to assure themselves of the robustness of their overall clinical governance arrangements. WMQRS LTV QS V

6 PATHWAY OF CARE The pathway of care for children and young people needing long-term ventilation is summarised in Figure 1. Figure 1 Pathway of Care Regular review Need for longterm ventilation apparent Initiation of long-term ventilation Care at Home Transition to Adult Services Step Down or Short Break care Acute care for intermittent exacerbations Palliative and end of life care Throughout this pathway, each child and young person needing long-term ventilation, and their families, should have the information, support and care that they need, in particular: A lead consultant from the Tertiary Long-Term Ventilation Service A nominated Community Children s Nurse who will liaise with local services as required and may also be the key worker An agreed Personal Care Plan A review of their care at least annually Children needing Level 2 or 3 care, and some needing Level 1 ventilatory care who have other medical conditions, should also have: A nominated key worker 24/7 access to children s nursing support who will be able to access medical advice if required A range of services is needed to support the care of children and young people on long-term ventilation, including transport, education, housing, social care, ambulance and other services. These services are in addition to the wide range of local voluntary organisations, for example, Beavers and Brownies, who help to support social integration. A few children will be unable to return home and will become looked after children needing long-term foster or residential care. The specific services covered by these Quality Standards are: Tertiary Long-Term Ventilation (LTV) Service This service will be based in a hospital providing paediatric specialist services, including a Paediatric Intensive Care Unit (PICU). Services initiating non-invasive ventilation only will be based in a hospital with a paediatric High Dependency Unit or PICU. Step Down / Short Break Service This service will care for children and young people who do not need to be in hospital but who, for a variety of reasons, cannot be cared for at home. This will include times when families need a short break from providing care. This service will provide care overnight as well as during the day. The environment and routines will be as similar to home as possible and the service will encourage links with the child s family, friends, school and other activities. The service may provide either step down or short breaks or both. WMQRS LTV QS V

7 Home Support Service This service will support the ongoing care of the child or young person at home by providing a home care package. Home support may be provided by a range of different types of organisations including NHS Trusts, voluntary sector and private providers. Acute Care Service Acute care during exacerbations may be provided at the hospital at which the Tertiary Children s LTV Service is based or may be provided by an acute hospital nearer the child s home. Children on long-term ventilation should be admitted only to hospitals with a Paediatric High Dependency or Intensive Care Unit meeting appropriate Quality Standards. Children on long-term ventilation may not need admission to high dependency or intensive care units but are likely to need the specialist respiratory and airway management competences of staff in these hospitals. Children s Long-Term Ventilation Network All services will work together, and with commissioners, as part of a Children s Long-Term Ventilation Network. The area covered by a Network is not defined by these Quality Standards but will normally be the area served by one or a small number of Tertiary Children s LTV Service providers. A single provider organisation may provide more than one of these services. STRUCTURE OF THE QUALITY STANDARDS Each Quality Standard is structured as follows: Reference Number (Ref) This column contains the reference number for each Quality Standard which is unique to these standards and is used for all cross-referencing. Each reference number is composed of two letters (the first identifying the care pathway and the second the service to which a standard applies) and three digits (the first identifying the relevant section and the last two being unique to that Quality Standard). The reference also includes a guide to how the Quality Standard will be reviewed: Background information to review team ing facilities Meeting children, young people, families and staff Case note review or clinical observation umentation should be available. umentation may be in the form of a website or other social media The shaded area indicates the approach that will be used to reviewing the Quality Standard. Appendix 4 summarises the approach to the provision of evidence of compliance. This may be useful if, in future, peer review of compliance with the Standards takes place. Quality Standard (QS) Notes This describes the quality that services are expected to meet. The notes give more detail about either the interpretation or the applicability of the standard. WMQRS LTV QS V

8 Pathway and Service Letters The Quality Standards are in the following sections: PP- Children and Young People Pathway Long-Term Ventilation Service PY- Children and Young People Pathway Children s Long-Term Ventilation Network PZ- Children and Young People Pathway Commissioning Some Quality Standards are not applicable to all types of service. Topic Sections Each section covers the following topics: -100 Information and Support for Children, Young People and Families -200 Staffing -300 Support Services -400 Facilities and Equipment -500 Guidelines and Protocols -600 Service Organisation and Liaison with Other Services -700 Governance Information and Support for Children, Young People and Families is the first section of the Standards because these aspects of their care should be clearly visible. These Standards can also easily be reviewed by children, young people and families. Terminology A glossary of terms and abbreviations used in the Quality Standards is given in Appendix 5. Certain terms are used throughout the Quality Standard: Child Family School Term Meaning A child or young person needing long-term ventilation Parents, siblings, grandparents and other adults with responsibility for caring for the child or young person. Nursery, school or college Key Worker The key worker. This is described in more detail in Appendix 5. Policies, Protocols, Guidelines and Procedures: The Quality Standards use policy, protocol, guideline and procedure based on the following definitions: Policy Protocol Guidelines Procedure A course or general plan adopted by an organisation, which sets out the overall aims and objectives in a particular area. A document laying down in precise detail the tests or steps that must be performed. Principles which are set down to help determine a course of action. They assist the practitioner to decide on a course of action but do not need to be automatically applied. Clinical guidelines do not replace professional judgement and discretion. A procedure is a method of conducting business or performing a task, which sets out a series of actions or steps to be taken. WMQRS LTV QS V

9 For simplicity, some standards use the term guidelines and protocols which should be taken as referring to policies, protocols, guidelines and procedures. All clinical guidelines should be based on national guidance, including NICE guidance where available. Local guidelines and protocols should specify the way in which national guidance will be implemented locally and should show consideration of local circumstances. COMMENTS ON THE QUALITY STANDARDS The Quality Standards will be revised as new national guidance becomes available. Comments on the Quality Standards are welcomed and will be taken into account when they are updated. Comments should be sent to More information about WMQRS, its Quality Standards and reviews is available at WMQRS LTV QS V

10 QUALITY STANDARDS SERVICES PROVIDING LONG-TERM VENTILATION FOR CHILDREN AND YOUNG PEOPLE These Quality Standards (QSs) should be met by each service providing care for children and young people needing longterm ventilation. A small number of these Standards (QSs PP-103 to PP-106) should be met once for each child and not once in each service. Some Standards, or sections of Standards, apply only to Level 2 and Level 3 children and to children needing Level 1 ventilatory care but whose other conditions result in a higher complexity of need. This is shown adjacent to the heading of the Standard. Where a section of a Quality Standard applies only to these children with more complex needs, this section is marked with an asterisk. These Standards are additional to the requirement to register with the Care Quality Commission as a provider of nursing and of personal care. Most of these Quality Standards apply to all health services which provide long-term ventilation for children and young people. The following Standards are not applicable (N/A) to all services: QS Ref Tertiary Children s LTV Service Step Down / Short Break Service Home Support Service PP-107 N/A N/A PP-110 N/A PP-202 N/A N/A PP-203 N/A PP-205 N/A PP-207 N/A N/A PP-304 N/A N/A PP-501 N/A N/A PP-605 N/A Ref Standard: Asterisked sections apply only to children needing level 2/3 care INFORMATION AND SUPPORT FOR CHILDREN, YOUNG PEOPLE AND THEIR FAMILIES PP-101 Service Information Each service should offer children, young people and families information covering: a. What the service provides b. Staff and facilities available c. How to contact the service for help and advice, including out of hours Note: Information should be written in clear, plain English and should also be available in formats and languages appropriate to the needs of the local population. This should include developmentally appropriate information for children and young people, including those with learning disabilities. Information for children and young people should meet the You're Welcome - Quality criteria for young people friendly health services London (DH, 2011). WMQRS LTV QS V

11 Ref PP-102 Standard: Asterisked sections apply only to children needing level 2/3 care Information about Long-Term Ventilation Children, young people and families should be offered discussion and access to written information about their long-term ventilation, including: a. Description of their condition and its impact b. Equipment including how to use it, preventing problems and what to do if they occur, maintenance and storage and how to return to equipment when no longer needed. This information may be in the form of a User Guide or Manual. c. Medication, including what it is for, when to take it, storage and possible side effects d. Management of acute and chronic changes in health e. Lifestyle advice, including nutrition, exercise and travel f. Housing and housing adaptations g. Emotional, spiritual and psychological support for children and young people themselves and for their families, including siblings h. Benefits advice, Personal Health Budgets and how to access charitable and voluntary sector resources i. Transport and mobility j. Other local services available for children and young people with complex care needs and how to access them k. Advance Care Planning (if appropriate) l. Relevant voluntary organisations and support groups m. Where to go for further information, including useful websites 1 As QS PP Information may not be relevant to all children and may be given only to children with particular needs or at different stages in the patient pathway. Access to information means that either written information is given to the child, young person and family or they are given something in writing which sign-posts them to information of appropriate quality. 3 Information should be consistent with that given by other services within the Network. It may be helpful for services serving the same population to share the development and production of information for children, young people and families. WMQRS LTV QS V

12 Ref PP-103 Personalised Care Plan Standard: Asterisked sections apply only to children needing level 2/3 care Each child and young person should have an agreed, up to date Personal Care Plan covering: a. Agreed goals b. Care provided by the young person and their family and any training needed c. Continuing care assessment or home care package* d. Therapeutic interventions (pharmacological and non-pharmacological) e. Equipment used and maintenance of equipment f. Contact details for their Home Support Service* g. How to access 24/7 Children s Nursing Support* (QS PP-205) h. Names and contact details for their: i. Key worker * (QS PP-105) ii. Community Children s Nurse (QS PP-106) iii. Tertiary Children s LTV Service consultant iv. Community paediatrician i. Choices and options for short breaks* j. Religious, spiritual and cultural needs k. Transport arrangements and transport needs l. Emergency Health Care Plan (Escalation Plan) including the Acute Trust to which they will normally be admitted for acute exacerbations and information to be given to ambulance staff m. Risk assessment n. Planned review date and how to access a review more quickly, if necessary. o. Transition to adult services (if applicable) p. Weaning of ventilation (if applicable) This QS should be met once for each child (not once in each service) and should be communicated to the child s general practitioner. 1 A nationally-recognised decision-support tool for care needs is given in the National Framework for Children and Young People s Continuing Care, DH No other nationally validated assessment tools are available at present. 2 Other plans and checklists which should be in place are covered in QS PP-601 note 2. 3 The key worker and the nominated Community Children s Nurse may be the same person. 4 The Emergency Health Care Plan may be called an Escalation or Exacerbation Plan. This may be part of the child s Care Plan or may be a separate document. The acute Trust to which the child is normally admitted should have a high dependency or intensive care unit. WMQRS LTV QS V

13 Ref PP-104 PP-105 Standard: Asterisked sections apply only to children needing level 2/3 care Formal Reviews of Care Plan and Continuing Care Assessment (if applicable) Each child should have a formal review of their care as required by their continuing care assessment (if applicable) and at least annually. This review should involve, at least: a. The child and their family b. Their key worker * (QS PP-105), Community Children s Nurse (QS PP-106), Tertiary Children s LTV Service consultant, community paediatrician, social care* and education* representative c. Any other staff with regular input to the care of the child d. Any other consultants with regular input to the care of the child The review should cover all aspects of the Personal Care Plan (QS PP-103). The young person and their family should be offered any relevant additional information (QS PP-102) and their Personal Care Plan should be updated. The outcome of the review should be communicated to the relevant commissioner of care and to the child s general practitioner. This QS should be met once for each child (not once in each service). 1 Reviews of the continuing care assessment and care package should also be undertaken at three months after the child is first discharged from hospital on long-term ventilation. This is covered in QS PY-602. Annual reviews should either be undertaken at a single meeting or there should be a robust system of recording and communicating each aspect of the review to all involved in the care of the young person. 2 Participation in the review meeting may be by telephone or video link. Key Worker (Level 2/3 only) Each child should have a key worker who they and their family can contact for queries, advice and support. This person should have responsibility for: a. Maintaining regular contact with the child and their family and providing information, support and advice covering all aspects of QSs PP-103 b. Liaison with the child s named Community Children s Nurse (if a different person) c. Keeping relevant documentation up to date, including the Personal Care Plan, Agreement of Care, Education Health Care Plan and related risk assessments d. Informing other services involved with the child about changes to their condition or plan of care (QS PP-103) e. Informing the child s school of changes to their condition or plan of care (QS PP-103) f. Initiating a multi-disciplinary care planning meeting in order to review the child s plan of care if this is needed before the next planned review date (QS PP-104) g. Initiating and / or participating in multi-disciplinary discharge planning (QS PP-602) h. Initiating and updating the child s Common Assessment Framework (if applicable) i. Consideration of and acting on safeguarding issues This QS should be met once for each child (not once in each service). 1 Appendix 5 gives more detail of the role of the key worker. 2 Coordinating and maintaining an overview of the patient s care pathway is central to the key working function. The individual will not be expected to answer all queries and will signpost or support patients and carers in accessing other services or advice. The key worker may or may not be the main provider of health care. They should be available during office hours and cover for absences should be available. The key working functions may be carried out by a small number of individuals rather than a single person, so long as there is good coordination between them. 3 QS PP-601covers arrangements for allocation of the key worker. 4 This QS is not applicable to children needing level 1 care only. WMQRS LTV QS V

14 Ref PP-106 PP-107 PP-108 PP-109 Community Children s Nurse Standard: Asterisked sections apply only to children needing level 2/3 care Each child should have an identified Community Children s Nurse with responsibility for liaison with community paediatricians and other local services, including education and housing services, to advocate for needs of the child and their family. This QS should be met once for each child (not once in each service). 1 This may be the same person as the key worker (QS PP-105) or may be different. 2 Tertiary Children s LTV Services should ensure a Community Children s Nurse is identified as soon as the need for long-term ventilation becomes apparent. Agreement of Care (Level 2/3 only) An Agreement of Care between the family and the Home Support Service provider should be negotiated and agreed covering the family and service s responsibilities and arrangements for staff while working within the family home. 1 The Agreement of Care may have other names, such as the Family Service Agreement. 2 This QS is applicable only to Home Support Services. Education Health Care Plan Each child should have an Education Health Care Plan covering at least: a. School attended b. Transport to and from school* c. Care required while at school* d. Responsibilities of carers and of school staff e. Training and competency requirements for whoever is providing the child s care in school* f. Likely problems and what to do if these occur g. What to do in an emergency (or a copy of the child s Emergency Health Care Plan) h. Arrangements for liaison with the school i. Review date and review arrangements Note: For children needing level 1 care this QS may only apply to overnight stays. Self-Care and Family Involvement in Care Young people themselves, and family members, should have information, encouragement, support and training to enable them fully to participate in their care. Training and evidence of completion of competences should be recorded in the child s case notes, reviewed at least annually and update as necessary. WMQRS LTV QS V

15 Ref PP-110 PP-111 PP-196 Facilities for Families Standard: Asterisked sections apply only to children needing level 2/3 care Services providing overnight care away from the child s home should have: a. Information for families on service routines, facilities that families may want to use, transport facilities and car parking b. Appropriate facilities for families, including for other children 1 This QS is not applicable to Home Support Services. 2 Appropriate facilities for families should normally include: A comfortable chair at the child s bedside, somewhere comfortable to sit away from the ward or child s bedroom and a quiet room for relatives A toilet and washing area and a kitchen or other facility for getting hot food Changing and play areas for other young children Overnight facilities including a foldaway bed or pull-out chair-bed next to the child and, ideally, accommodation on site but away from the ward or child s bedroom Personal care packs for relatives who unexpectedly stay overnight Facilities for children with severe physical disability, including hoists and bath/shower equipment Play and Psychological Support Children and young people and their families should have direct access to the following: a. Play support to enable the child s development and well-being b. Play and distraction during any painful or invasive procedures c. Psychological support for the child, parents, siblings and other close family members d. An assessment of the needs of family carers e. Information and advice on services available to provide support to siblings and family members 1 QSs PP-202 and PP-203 give detail of the staffing and competences expected in each service. 2 Bereavement support is covered in the Quality Standards for Services providing Palliative Care for Children and Young People. 3 Assessment of the needs of family carers should be part of the continuing care assessment (when applicable) and may be through referral to social care. 4 A range of psychological support should be available including counselling and clinical psychology support. General Support for Children and their Families Each child and their family should have easy access to the following services. Information about these services should be easily available: a. Interpreter services b. PALS and how to make a comment, compliment or complaint c. Spiritual support d. HealthWatch or equivalent organisation 1 Information should be written in clear, plain English and should also be available in formats and languages appropriate to the needs of the local population. This should include developmentally appropriate information for children and young people, including those with learning disabilities. Information for children and young people should meet the You're Welcome - Quality criteria for young people friendly health services London (DH, 2011).). 2 This QS is about signposting to relevant services. The actual services available may be different in different areas. WMQRS LTV QS V

16 Ref PP-199 Standard: Asterisked sections apply only to children needing level 2/3 care Involving Children, Young People and Families The service should have: a. Mechanisms for receiving feedback from children, young people and their families about the treatment and care they received. b. Mechanisms for involving children, young people and families in decisions about the organisation of the service. c. Examples of changes made as a result of feedback and involvement of children, young people and their families. Note: The arrangements for receiving feedback from children, young people and families may involve surveys, including the national patient survey, focus groups and/or other arrangements. They may involve Trust-wide arrangements so long as issues relating to the specific service can be identified. STAFFING PP-201 Clinical Leadership The service should have the following nominated clinical leads: a. Lead nurse or other registered healthcare professional with: i. Training and experience in the care of children on long-term ventilation ii. Competences in management and leadership b. Lead paediatric respiratory or intensive care consultant (Tertiary Children s LTV Services only) Clinical leads should have some job-planned time allocated for their leadership role within the service, including for ensuring all relevant Quality Standards are met. Note: Tertiary Children s LTV Services should meet both a and b. WMQRS LTV QS V

17 Ref PP-202 Standard: Asterisked sections apply only to children needing level 2/3 care Staffing Levels Tertiary Children s LTV Services The service should have sufficient staff with appropriate competences for the usual number of children cared for by the service, their dependency and the complexity of their needs. Staffing should include: a. Medical staff b. Nursing staff with a minimum of 75% children s trained nurses c. Children s carers, all of whom should have an NVQ level 3 in a child or young adult-related subject (or equivalent) d. Physiotherapy (Monday to Friday and on call at weekends) e. Occupational therapy (Monday to Friday) f. Dietetics (Monday to Friday) g. Speech and language therapy (Monday to Friday) h. Clinical and educational psychological support (Monday to Friday) i. Play support (Daily) j. Youth workers (Flexible availability depending on the needs of the child) Staffing should be sufficient to provide 24/7 advice across the network (QS PP-207). Cover for absences should be available so that the functions of the service can continue during times of annual leave, study leave and short-term sickness. PP Staffing may include volunteers with appropriate competences or others paid from personal budgets. 2 Staffing should be sufficient to meet Quality Standards relating to the key working function (QS PP-105) and nominated Community Children s Nurse (QS PP-106) unless these are provided by another service. 3 A minimum of 80% children s trained nurses is desirable and services should be working towards this level. 4 This QS applies only to Tertiary Children s LTV Services. Staffing Levels Home Support and Step Down / Short Break Services The service should have sufficient staff with appropriate competences for the usual number of children cared for by the service, their dependency and the complexity of their needs. Staffing should include: a. Registered nursing staff, of whom a minimum should be 75% children s trained nurses b. Children s carers, all of whom should have a NVQ level 3 in a child or young adult-related subject (or equivalent) Staffing should be sufficient to meet Quality Standards relating to Observation of Practice (QS PP-206) and Weekly Review (QS PP-604). Staffing should be sufficient to meet Quality Standards relating to the key worker * (QS PP-105), nominated Community Children s Nurse (QS PP-106) and 24/7 Children s Nursing Support* (QS PP-205) unless these are separately commissioned. Cover for absences should be available so that the functions of the service can continue during times of annual leave, study leave and short-term sickness. 1 Staffing may include volunteers with appropriate competences or others paid from personal budgets. 2 Allied health professional and other support services are covered in QS PP If the service also provides care for adults then 75% of nursing staff caring for children and young people should be children s trained nurses. 4 A minimum of 80% of registered nurses being children s trained nurses is desirable and services should be working towards this level. 5 Cover for absences may be achieved through agreed arrangements with another service. 6 This QS is not applicable to Tertiary Children s LTV Services. WMQRS LTV QS V

18 Ref PP-204 Standard: Asterisked sections apply only to children needing level 2/3 care Competence Framework and Training Plan Anyone with caring responsibilities for children and young people on long-term ventilation (QS PP-202) should have, and should maintain, competences appropriate to their role in, at least: a. Ventilation b. Resuscitation c. Transporting ventilated children* d. Professional boundaries e. Child safeguarding f. Working in the home environment* (where applicable) g. Infection control and disposal of clinical waste Where appropriate for the needs of the child: h. Tracheostomy care* i. Oxygen via a ventilator j. Humidification* k. Saturation monitoring l. Urinary catheterisation* m. Spinal care* n. Nasogastric feeding or gastrostomy* A competence framework should show the competences expected for different roles within the service and a training plan should cover achievement and maintenance of these competences. PP This QS applies to all staff identified in QS PP-202 or PP-203 except doctors in training where expected competences are laid down by the relevant Royal College. The Coventry and Warwickshire Children and Young People s Interactive Competency Framework may be helpful in achieving this QS and can be found at Further guidance on competences needed is available from the Royal College of Nursing or Skills for Health 2 This QS is additional to the competences of everyone working with children, such as information governance, moving and handling, Control of Substances Hazardous to Health and caring for children with disabilities. 3 Where volunteers and or others paid from personal budgets are part of the core staffing (QS PP-202 or PP- 203), the competences they are expected to achieve should also be specified. 24/7 Children s Nursing Support (Level 2/3 only) A registered children s nurse with competences in the care of children needing long-term ventilation should be available at all times (24/7). This nurse should: a. Have access to each child s latest Personal Care Plan (QS PP-103) b. Have information about the equipment used and maintenance arrangements c. Have access to the child s Tertiary Children s LTV Service for advice (QS PP-207) 24/7 Children s Nursing Support should be organised to give reasonable continuity of care. Staff providing this service should have direct contact with the family at least quarterly either through providing direct care or through observation of practice of staff providing care (QS PP-206). 1 24/7 Children s Nursing Support may be provided by the service itself or may be separately commissioned (QS PZ-603). This QS may be achieved through collaboration with other services. 2 The 24/7 Children s Nursing Support will also require contact numbers for staff, contact numbers for all families, current ventilation prescriptions and Emergency Health Care Plans, current competences for each carer for each child, adverse weather policy and advanced care plans (if applicable). 3 This QS does not apply to Tertiary Children s LTV Services. WMQRS LTV QS V

19 Ref PP-206 PP-207 PP-208 Observation of Practice Standard: Asterisked sections apply only to children needing level 2/3 care All children s carers should have their practice observed by a registered healthcare professional with competences in the care of children needing long-term ventilation for at least one hour every two months. Observation of practice should normally take place in the setting where care is delivered. Note: The purpose of observation of practice is to ensure staff providing care are maintaining appropriate competences and behaviour, and are abiding by the service s guidelines, policies and procedures. Tertiary LTV Advice Service The following staff should be available at all times(24/7) to provide advice to services with the network: a. Paediatric respiratory or intensive care consultant b. Registered children s nurse with competences in the care of children needing long-term ventilation Note: This QS applies only to Tertiary Children s LTV Services. Emotional Support for Staff PP-209 All staff should have direct access to emotional and psychological support or counselling. 1 This QS also applies to administrative and clerical staff (QS PP-299). 3 2 Access to psychological support through occupational health services should be available but is not sufficient for compliance with this QS. 4 3 This QS should also apply to staff employed through Personal Health Care Budgets. Clinical Supervision PP-299 All healthcare professionals should be offered regular clinical supervision appropriate to their role at least quarterly. This should include safeguarding supervision. Administrative and Clerical Support Administrative, clerical and data collection support should be appropriate for the number of children cared for by the service. Note: The amount of administrative, clerical and data collection support is not defined. Clinical staff should not, however, be spending unreasonable amounts of time which could be used for clinical work on administrative tasks and data entry. WMQRS LTV QS V

20 Ref Standard: Asterisked sections apply only to children needing level 2/3 care SUPPORT SERVICES PP-301 Support Services Home Support and Step Down / Short Break Services The following services should be available to support children on long-term ventilation in the location where care is delivered: a. Physiotherapy (Monday to Friday) b. Occupational therapy (Monday to Friday) c. Dietetics (Monday to Friday) d. Speech and language therapy (Monday to Friday) e. Clinical and educational psychological support (Monday to Friday) f. Play support (Daily) g. Youth workers (Flexible availability depending on the needs of the child) Cover for absences should be available so that the services can continue during times of annual leave, study leave and short-term sickness. PP-302 PP-303 Note: If support services are part of the core team (QS PP-203) then that particular aspect of this QS is not applicable. Other Services Providing Support Where Care is Delivered The following services should be available to support children on long-term ventilation in the location where care is delivered: a. Education services (Monday to Friday) b. Chaplain or multi-faith representative (24/7) c. Home Oxygen Assessment and Review Service (7/7) d. Transport services for children with complex needs* (Monday to Friday) e. Social work (Monday to Friday) and Emergency Duty Team 1 Daily means seven days a week. 2 If support services are part of the core team (QS PP-202 or PP-203) then that particular aspect of this QS is not applicable. Other Support Services Timely access to the following services should be available: a. Pharmacy advice (telephone advice 7/7) b. Respiratory physiology, lung function tests and sleep studies c. Wheelchair assessment, supply and maintenance service (if required) d. Assessments for housing adaptations* e. Community paediatrician f. Continence services (if required) Note: Timely is not strictly defined but should include arrangements for urgent access as well as routine referrals. WMQRS LTV QS V

21 Ref PP-304 Standard: Asterisked sections apply only to children needing level 2/3 care Support Services Tertiary Children s LTV Services Tertiary long-term ventilation services should be based on the same hospital site as: a. Paediatric Intensive Care Unit (if initiating invasive ventilation) or Paediatric High Dependency Unit (If initiating non-invasive ventilation only). These services should meet applicable Paediatric Intensive Care Society Standards for the Care of Critically Ill Children 4th Edition (2010). b. Consultant-led ENT service. Note: This QS applies to Tertiary Children s LTV Services only. WMQRS LTV QS V

22 Ref Standard: Asterisked sections apply only to children needing level 2/3 care FACILITIES AND EQUIPMENT PP-401 Equipment Timely access to the following equipment should be available: Each child who is ventilator dependent (level 2 or 3): a. Two ventilators including internal and external battery backup b. Two oxygen saturation monitor or one oxygen saturation monitor and robust arrangements for replacement within 12 hours c. Hand-held saturation monitor d. Self inflating bag e. Two sets of suction equipment f. Two sets of appropriate humidification equipment g. Access to a mobile phone and to a land line in the home (or back up mobile) h. Equipment needed for tracheotomy care i. Height adjustable (profiling) bed or cot j. Back up lighting k. Call system l. Adequate seating for care staff m. Dimmable background lighting n. Adequate number of electrical points o. Supply of consumables p. Appropriate storage for equipment and consumables q. If required: i. Sleep system ii. Communication aids iii. Feed pump iv. Physiotherapy equipment v. Wheelchair vi. Nebuliser vii. Carbon dioxide monitoring equipment viii. Chest physiotherapy equipment Each child needing level 1 ventilatory support: r. One ventilator in the home s. Access to a replacement ventilator within 24 hours All equipment should be fully maintained and serviced with appropriate arrangements for emergency replacement in the event of equipment failure and access to technical support within 24 hours for equipment care (QS PP-606). All equipment should be supported by training and manuals. 1 QS PP-606 covers arrangements for setting up and maintaining equipment. 2 Timely is not strictly defined but should ensure that there is no delay in the availability of equipment when needed for the care of a child. WMQRS LTV QS V

23 Ref Standard: Asterisked sections apply only to children needing level 2/3 care GUIDELINES AND PROTOCOLS PP-501 PP-502 Guidelines on Initiation of Ventilation Guidelines on initiation of ventilation should be in use covering at least: a. Involvement of the family and consent for initiation of long-term ventilation b. Multi-disciplinary discussion involving staff of the Tertiary Children s LTV Service* Note: This QS applies only to Tertiary Children s LTV Services. Clinical Guidelines Clinical guidelines should be in use covering common problems in the care of children on long-term ventilation, including: a. Pressure sores and tissue viability b. Tracheostomy care* c. Ventilation d. Suction of natural and artificial airways* e. Oxygen therapy f. Saturation monitoring g. Resuscitation h. Gastrostomy* i. Venous thrombo-embolism assessment and prevention* Note: Clinical guidelines should describe the general approach or policy of the service. Details of the care of individual children will be given in their Personal Care Plan (QS PP-103). WMQRS LTV QS V